I lost 100% of the feeling in my left side (body, right-side of face) after a stroke & let me tell you it was NO day at the beach, I have numerous scars which didn't hurt but there was simply no awareness of the damage occurring, so it tended to be severe. (Other than the smell of burning flesh....)
And yes, people born with this condition die young.....
With training most of the possible bad side effects can be mitigated, but she will have a life of very limited freedom, and some injuries resulting in infections and scaring, are almost inevitable. There is also a high risk of hip, knee, other joint and soft tissue damage needing surgery later in life. In the past people with conditions causing those symptoms rarely lived to maturity.